Sarah Levin is 11 years old, and has beaten acute lymphoblastic leukemia (ALL) twice. This is her story.
The first time I got diagnosed with ALL I was only three, so I don’t remember that much about it. But what my mom and dad have told me is that it was a really sad and scary time for my family. It happened a week before my 3rd birthday. I actually spent my 3rd birthday in at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC) on 7 West, which used to be the oncology floor. It was very challenging for my mom and dad to split time between me and my sister. They both wanted to be with me, but they also wanted to be with her and help her through such a hard time.
I remember getting lumbar punctures and a drug called asparaginase, which aren’t good memories because in trying to help me, the doctors had to poke me with sharp needles and inject me with fluids. But I also remember some good things, like when Winnie the Pooh came to visit me on my 3rd birthday. I had been having a really bad day until he came into my room, then everything got better. I also really liked going to the Blum Resource Center to play with all the toys they had there. And I did lots of crafts, which took my mind off things.
I remember a lot more about the second time I got sick because it was a month before my 9th birthday. I remember when I first got diagnosed: We were just driving into the driveway from picking my sister up from school when my pediatrician called with the news. I had gone in to her office that morning for a blood test because I had been feeling very tired and had a low fever and my mom thought I looked really pale. When she called to tell us I got on the phone and asked her, “Am I going to die?” She told me, “There are more medicines now that the first time you got sick, so I think it will be okay.”
We went right to the ER, where the doctors ran a number of blood tests, put in IVs and started giving me fluids. It was the scariest time of my life; I didn’t know if I was going to live or die.
I went up to 6 North, which was the new oncology floor. All the nurses were so kind and nice—they made me feel like family. The next day the doctors did a bone marrow biopsy and an LP to see how much cancer was in my bone marrow and if it was the same kind of cancer that I had when I was three. Indeed it was: I had relapsed ALL.
I started chemo on March 12, 2010. Chemo was hard. I got very sick, but never threw up. The worst part for me was how long it was and how cruddy I felt. I went through my first month of treatment, during which Lewis Silverman, MD, and my other doctors gave me steroids, vincristine and other meds. But I didn’t go into remission after that first month, as Dr. Silverman had hoped, so I had to go through much harsher and stronger second round of chemo. It worked, but it had many awful side effects. I got a burn from the inside out so that my skin looked sun burned, I had fevers and rashes…it was really miserable.
What helped my family and me get through were the nurses—they were amazing! We talked about girl stuff and gossip; they were more like girlfriends to me than nurses. They answered all my questions with truthful answers, instead of just telling me stuff to make me feel good.
Because I didn’t go into remission after my first month of chemo, I had to have a bone marrow transplant. It was very scary for me at first, because I didn’t know what to expect and I didn’t know much about transplants. But once my doctors told me about it and what everything would be like, I was not as scared. I started with intense chemo and full body radiation for six days, and then I got my transplant. I can’t remember it too well because I was on so much pain medication, but I remember it really stunk.
What I do remember is walking up and down the hallway everyday. It was 17 laps to a mile. I usually did at least one mile a day. The nurses told me that it was great that I was walking because it would help me get out of the hospital faster. A lot of kids don’t walk because you feel so cruddy after a transplant. You just want to sit in bed and watch TV. But I’m a pacer: when I don’t feel good, it makes me feel better to walk. When I got out of the hospital after 28 days, the nurses said it was because I walked and kept eating.
Once I went home I did better by the day. But it was hard because for that first year I had to stay in isolation while my body got stronger; I couldn’t go to anyone’s house and they could not come into mine. My mom thought of all these crazy ideas like buying a heater so we could hang out in the garage and renting a tent so we could have Thanksgiving with the family.
Being in isolation was really hard because I couldn’t go any place and I missed some good celebrations. I couldn’t even go to school, so I was home schooled. Thinking back I really liked home schooling because it was only 2 ½ hours a day, but I still got all the work done that my friends were doing at school. I got so much time to hang out at home and do what I wanted, except I couldn’t go places.
When I got out of isolation I went everywhere. The first time I went to the supermarket I was like a kid in a candy store. I wanted to look at everything! I was so excited to be in public, I hadn’t been to a grocery store in over a year. I will never take going to any store for granted now.
I had so many experiences, good and bad; it was a journey to hell and back again. But now I am thriving. I am in gymnastics, on a rock climbing team and I am back in school. Sometimes I feel like it was so long ago that it hardly happened. If I tried to tell my whole story, it might take me 100 pages…
Learn more about acute lymphoblastic leukemia (ALL). To make an appointment at DF/CHCC, email Pedi_onc@dfci.harvard.edu or call 1-888-PEDI-ONC (1-888- 733-4662).